ramakentesh Posted March 19, 2012 Author Report Share Posted March 19, 2012 good point. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted October 4, 2012 Report Share Posted October 4, 2012 Hydrocortisone helped me a ton....Midrodine second. I just had a Positive ANA. Which helps me understand why I was pushed thru POTs with a corticosteroid. Now to try and figure out which autoimmune I am...we shall see Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted February 12, 2013 Report Share Posted February 12, 2013 Top helpful treatments (other than exercise and IV saline) for me:-Adderall- high dose antihistamines. (Loratidine 20-40mg, and Famotidine 80-120 mg)- massage of neck, back and feet when I'm crashing helps to stimulate parasympathetic system.- high salt diet and high caffeine diet Quote Link to comment Share on other sites More sharing options...
boymommy3 Posted February 15, 2013 Report Share Posted February 15, 2013 I didn't actually vote because I didn't feel I could really answer the second question in the Poll, but here's what is helping me, I take a bb and it works quite well to keep my hr manageable, I just wish it helped with all the other POTS symptoms!I also salt load and drink a 20 oz. Gatorade everyday. I do try to see how many days in a row I can go w/out Gatorade sometimes before I start to feel really yucky and it's never more than 2 or 3 days that I can do without it. I really can tell a difference in how I feel with Gatorade.Thus far those are the only things that my doc has had me try. I am starting Celexa tomorrow though so hopefully that will help some symptoms as well. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 30, 2013 Author Report Share Posted March 30, 2013 Bump in case someone is interested. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 30, 2013 Author Report Share Posted March 30, 2013 FLorinef and exercise neck and neck. Quote Link to comment Share on other sites More sharing options...
gackedo Posted March 31, 2013 Report Share Posted March 31, 2013 Can't function wihout Clonodine. Quote Link to comment Share on other sites More sharing options...
weathermandj Posted April 1, 2013 Report Share Posted April 1, 2013 I'm using Tramadol (SNRI), Midodrine, Metoprolol Succinate, and Florinef. The combination controls the tachycardia, most of the time. Quote Link to comment Share on other sites More sharing options...
misstraci Posted April 1, 2013 Report Share Posted April 1, 2013 RELAX 86??? Did anything ever become of the high positive ANA? Just curious. Thanks.I didn't vote because nothing has seemed to help me and I refuse to take midodrine b/c I'm scared and I hear bad things. About to try lexapro again 5mg, very small dose, I wonder if it will even do anything. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 2, 2013 Author Report Share Posted April 2, 2013 caffeine and pseudoepiphridine should also be on the list. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted April 2, 2013 Report Share Posted April 2, 2013 RELAX 86??? Did anything ever become of the high positive ANA? Just curious. Thanks.I didn't vote because nothing has seemed to help me and I refuse to take midodrine b/c I'm scared and I hear bad things. About to try lexapro again 5mg, very small dose, I wonder if it will even do anything.I had my follow up with the Rhuemy and she disappointed me. Said my + ANA was something to watch (I'm fine with that), said my lowered immune system was also something to watch and could mean nothing (I was sort of wondering what are the "somethings" it could mean). Lastly she asked me what provokes my symptoms currently. And I said lying flat seems to be one thing. So she watched me lie flat, watched the veins bulge out of both my hands (usually is mostly right, this day veins seemed to perform for the Doc) and my PB dropped, HR ramped. She got scared and sent me out the door. She said dysautonomia's are really tough, she'll keep an eye on me to see if I'm any of her diseases (???) and go from there. She wants me to see her hubby (electro cardiologist) who helps some POTs people with those issues. I am actually cardiac cleared and I said as much. "Thanks for thinking of me for your husband. I"m sure he's great for the people who have POTS for those reasons, I'm kinda not that girl... also thanks for flaring me with that scary look on your face. Here's my $10 copay. See ya again - never"I might give up on Doc's for a while or try a rhuemy that has more guts. Can't tell what I want from day to day. I'm meditating for now. So the short answer to your question is I don't yet have an answer. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 2, 2013 Report Share Posted April 2, 2013 Most helpful: plain old benadrylLooking forward to trying: octreotideHey, just recently learned that benadryl ups the dopamine levels in the body. It helps to block acteylcholine.Issie, or anyone else familiar with this,I know this is an older post but I was wondering if you could point me to any source for the info on benadryl upping the dopamine levels? I recently learned that benadryl (diphenhydramine) is a serotonin reuptake inhibitor - something along the lines of SSRI's, but I'd really be interested to read about what it does to dopamine.ThanksAlex Quote Link to comment Share on other sites More sharing options...
misstraci Posted April 2, 2013 Report Share Posted April 2, 2013 awww I'm sorry RELAX86. That sounds like how most of my appointments pan out. How frustrating!!! I would also want to know what the "somethings" could be and why do we have to just "watch", why not dig now. It's not like you're sick for the first time on the certain day, if you're like me or most, you've BEEN sick and so it's not like watching is going to make things wax and wane. haha "here's my $10, see you again-never" That made me laugh!!! Kinda how a lot of things end for me too Keep digging! don't like discerning or belittling people ruin your search. Quote Link to comment Share on other sites More sharing options...
issie Posted April 2, 2013 Report Share Posted April 2, 2013 RE: Benadryl and Dopamine levels ----I had been told this by a nurse friend of mine awhile back. She developed dystonia and jerks - her doctor took her off one med and put her on massive amounts of Benadryl to help with her dystonia. I tried looking up info on this and found an article saying that it has an anticholonergic effect.Also, found another article showing it to have dopaminergic agonist affectshttp://en.allexperts.com/q/Herbs-Health-3224/f/GABA.htmThere were more articles showing dopaminergic agonist effects with Benadryl and also anticholonergic effects. With her it has helped her with her dystonia and tremors. I found a good many threads in different places stating that too high acetylcholine levels would mean too low dopamine. There is a fine line in balance. It is helping, but because of the med she was on that caused the dystonia in the first place --she probably has permanent damage from it and will not fully recover. She has been on massive doses of Benadryl for over a year now and still is not recovered.This is a study in rats and the effects of H1 on dopaminergic effects:http://www.ncbi.nlm.nih.gov/pubmed/10669037This is a study in regards to cats - but, thought it interesting the connections to H1 and H2 and the system that they seem to affect:http://www.ncbi.nlm.nih.gov/pubmed/6147762Issie Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 2, 2013 Report Share Posted April 2, 2013 Thanks a lot Issie. I will definitely take a look. Sounds interesting.Alex Quote Link to comment Share on other sites More sharing options...
adigitalashley57 Posted June 27, 2013 Report Share Posted June 27, 2013 I'm very interested in the fact that it almost seems like the most successful and the least successful are almost very closely the same things in each poll. I mean not exactly but relatively close. It's interesting to me that more people haven't had luck with antidepressants as all the specialists I have gone to tout them as their first line of defense. This interests me. Is it that people aren't giving it enough time so that the start-up side effects can wear off? Because essentially the science behind ssri's and snri's for this disorder are very sound. I'd be very curious to hear more on this topic. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 5, 2013 Report Share Posted July 5, 2013 Ashley--keep in mind this is a small sample size and may not represent the larger populations w dysautonomia accurately. I think I have seen that SSRI's are believed to be useful to about 50% of POTS patients. If that is the case then many may try and will be not be helped by this treatment. Florinef is also a common drug prescribed, but does not help everyone. One thing that seems apparent from this forum is that there are a dozen or more treatments that may be helpful, and every patient has treatment tailored to his or her specific symptoms and cause (if known). Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted July 21, 2013 Report Share Posted July 21, 2013 Can someone explain how Midodrine works for POTS? I understand how BEta Blockers work....If you have too much adrenaline and high heart rate and low Bp.....not sure what I should try. Tried Atenolol, prescribed but not tried Klonapin and on sodium pills. These salt pills do help but I feel like I have too much adrenaline ....do just bb help with this? I'm still very unclear how Klonapin and Xanax helps pOTS physiologically. What do they do? I'm so confused. One doc said I had too much adrenaline and then doing the testing where you lie down and then stand and then walk around...and draw blood to measure adrenaline at each intraval...did not show high adrenaline. So confusing. Quote Link to comment Share on other sites More sharing options...
Jan Posted July 22, 2013 Report Share Posted July 22, 2013 From the Mayo Web siteMidodrine is used to treat low blood pressure (hypotension). It works by stimulating nerve endings in blood vessels, causing the blood vessels to tighten. As a result, blood pressure is increased.So I guess it is a vasoconstrictor. Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted July 23, 2013 Report Share Posted July 23, 2013 Thanks Jan! Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted July 23, 2013 Report Share Posted July 23, 2013 I understand that if you have high adrenaline a beta is recommended (at times). But with Midpdrine, when is t commonly prescribed? Is adrenaline involved? Interested to see what symptoms it helps others with. Shaking???? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted November 1, 2013 Report Share Posted November 1, 2013 Suthrngal, have you tested your upright catecholamine levels? Quote Link to comment Share on other sites More sharing options...
trappedat20 Posted December 12, 2013 Report Share Posted December 12, 2013 You should add ADHD medicines to the list. I find adderall to help me considerably. Without it I sleep all day and am so fatigued and dizzy upon standing that I'm literally on bed rest all of the time and sleeping my life away. With it I'm still disabled but I'm able to stay away during the day and get out of bed and do things for limited amounts of time. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 14, 2014 Author Report Share Posted January 14, 2014 Bumpy bump Quote Link to comment Share on other sites More sharing options...
NaomiSpellman Posted January 19, 2014 Report Share Posted January 19, 2014 I don't have insurance for pills, but Coffee seems to be consistently helpful, though in controlled quantities. Quote Link to comment Share on other sites More sharing options...
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